Baclofen

By now you know that I have to take a bunch of pills throughout the day, all of which make me fall asleep.

Waking up in the afternoon is often more difficult than waking up in the morningtime. For example: today. Right now.

Coming out of my midday fog, I find myself in a cool, dark room on a hot, sunny day. I am emerging into a dreamlike reality, watching an obscure Youtube video that all too perfectly mimics my current mental state.

(I am not completely unconvinced that Lhasa de Sela isn’t one of my spirit guides.)

A low camera, never quite focusing on my beloved storyteller, pans the on-looking crowd dressed in scowls, judgmental half-smiles, and dark clothing. Nearing the end of the cameraman’s circle of judges is a photographer. Not looking too unlike myself before all the sun, she smiles more truthfully than the others and is the only one in the crowd who bothers to try to sing along. She manually advances her film. She appears to be shooting with what I swear is a Canon AE-1 , which just so happens to be my first and all-time favorite SLR, trumping even the modern day ultra-uber-DSLR’s.

In a good news/bad news situation, I always prefer to hear the bad first. So, this post isn’t necessarily written in chronological order. It’s OK. It doesn’t have to be.

I always try to piggy-back my appointments in New York so that I don’t have to make multiple trips for singular appointments. Luck is usually on my side, but sometimes it just isn’t possible. Over the next five weeks, I have a series of three trips that I have to make for single purposes.

Last Monday was the first trip. A check-up with my neurologist. This is the first check-up I’ve had in nine months where I hadn’t had a nerve block just prior to the appointment. And hey, guess what? I still have CRPS.

I arrived to the appointment about 45 minutes early. Which meant I had to sit and wait. Which my leg hates. So, like a obstinate child, my leg decided to have a full-blown temper tantrum. By the time of my appointment, my leg was in a state of uncontrollable dystonia, making it difficult for my neurologist to fully assess the condition of my condition. But my leg was cold, and a different color, maybe not as swollen, blah, blah, blah. He asked where my worst point of pain was. Under the medial malleolus? Yes. And the center of the top of my ankle. And about two inches above my lateral malleolus on my fibula. And at the top of my fibula. And sometimes behind my knee. “Uh, huh. Yes,” he said, “those are the major nerve junctions…”

My doctor then reviewed the timeline of all of our visits in order to determine my progress, if any. We agreed that the medication and the pain management treatments help reduce some of the CRPS symptoms.

We had a discussion about baclofen. He asked if it made me sleepy. I said yes, but it, combined with the diazapam, actually controls the spasms. He raised his eyebrow as he looked at my shaking leg. I said I didn’t take my dose of baclofen yet because I fall asleep within 10 minutes of taking it. “Ahhh. And so you wanted to be awake for the appointment?” We laughed.

Then he quoted Voltaire. (I know I’ve said it before, but I will say it again. I love my doctors so much. Because they do things like quote Voltaire.)

“The art of medicine consists of amusing the patient while nature cures the disease.”

Yeah. Basically, he said there’s not much that he can do for me at this point beyond refilling my prescriptions. He was frustrated that he isn’t treating me. His frustration is with CRPS and how the disease has a mind of its own. He said that I should keep seeing my pain management doctor and come back to see him for another check up in 3 months.

While trying to fumble my shaking leg into its boot, I asked, “so, is this my life now, for the rest of my life?”

He looked down, he sighed, he looked up, he looked into my eyes. He said, “for now… CRPS takes hold, but at some point, sometimes, usually after many years, it decides to ease up. You first came to me four months after your injury. We were able to treat it early, and that can be promising.”

So yeah…

In other, happier news, on Monday evening, I took another ballet class! This was my second class since my accident almost three years ago. The first was last March, just after I’d had my nerve block. Monday’s class, even though it was the same “absolute beginner” class I’d taken two months ago, was exceptionally more difficult. My leg was not cooperating, and I had trouble standing on the right foot. Releve’s, and most certainly jumps, were out of the question. But who cares. I danced again. Sort of.

Seeing my teacher, interacting with the other students, hearing the brilliant pianist play for us, all helped heal aching pieces of my psyche. My teacher lives close to where I was staying so we rode the train together and were able to catch up. She gave me the best hug I’ve had in a while. I told her when I would be back in town again and that I plan to come to class again.

I was staying relatively close to Rockefeller Center, and I really wanted to see Jeff Koons’s new installation, Seated Ballerina. I walked down Sixth Avenue, past Radio City Music Hall, and wouldn’t you know it? NYU was having their graduation. Apart from the ensuing chaos, it was a pretty spectacular scene. Coincidentally, Columbia’s medical school was also having its graduation on the same day.

I don’t go very many places, or very often, but responding to strangers has become very, very tiresome.

To break the monotony and repetition of how a freak misstep into a hole in the ground ruined my life as I knew it, I began to make up fantastic quick explanations about “what happened.” Sky diving, Space Mountain, tree climbing in the Serengeti, etc.

Sometimes, I don’t stop to clarify. I just keep on my wobbling way, leaving my interrogators to scratch their heads, trying to make heads or tails of what I said. Four or five wobbles away, I usually hear chuckles and I smile.

My responses are helped along by the medication, which has destroyed my internal filter. I don’t always know what I am thinking until I say it.

For example, a woman recently held a door for me. “Broken?” she asked.

Without hesitation, I responded, “Leg, no. Spirit, yes.”

I wobbled on, not stopping for further conversation. I didn’t hear a chuckle. I didn’t smile.

Let’s be clear: I am forced, against my will, to take medication. I don’t like feeling cloudy. I don’t like the constant confusion. I don’t like not being able to think clearly. I don’t like feeling as if my brain was replaced by straw.

Here is an example.

(Yesterday, told in the present tense.)

I brush my teeth. I shower. I want to put on deodorant. I brush my teeth instead. I leave the bathroom and make it two steps, stop and remember. That’s right: deodorant. I go back into the bathroom and see my toothbrush. I brush my teeth. I leave the bathroom and make it two steps, stop and remember. This time, I’m not going to allow that dang toothbrush to trick me, standing tall on it’s charger, with its pretty green light. I walk back into the bathroom (determined, with as much focus as I can muster), repeating to myself “deodorant. deodorant. deodorant. deodorant…” until my hand has a firm grip on the container.

It was the summer I turned 20. I was taking a break from serious ballet. I wanted to stay in shape by riding my bike and swimming. Like most ballet dancers, I had deeply rooted hang ups about my body size. I am 5’7″. At age 20, I weighed in somewhere between 112 – 115 lbs.

I was bathing suit shopping in a Sports Authority in Oceanside, CA. I tried to try on several different patterns of my trusty size 30. None of them fit. They were all the same size, why would they? I cried real tears in the Sports Authority dressing room for an embarrassing amount of time.

I pulled myself together, went back to the rack of suits and brought several size 32’s into my dressing room. They all fit. I chose a blue and green geometric pattern and went on my way. That event is etched in my memory as a key moment when I realized that I was growing up.

For almost two decades, I believed that weight is maintained by calories in = calories burned. I kept my weight fairly steady ranging between 115-120, and kept a consistent rotation of size 32 Speedo swimsuits.

And then, as we all know by now, on that fateful evening in June, 2014, I fell down.

The Gain

For the first several months of my injury, I stayed pretty fit. Being on crutches in New York City is one hell of a fitness plan. My arms never looked so good. My left leg was toned and trim.

My orthopedist uncrutched me about a month before I went to the neurologist for the first time. My right leg killed to walk on it, so I didn’t leave my apartment as often. Still, I watched what I ate and didn’t really gain weight. In perfect honesty, though, I wasn’t worried about a pouchy belly or saddle bags. I was mostly concerned about the fact that a full three months after my accident, my right ankle continued to be swollen, discolored, and horrifically painful.

The orthopedist referred me to a neurologist. The neurologist confirmed the orthopedist’s suspicions of RSD/CRPS. He prescribed meloxicam and gabapentin. While I titrated up to the doctor’s recommended dose, I was very sick to my stomach. And then I became the zombie that you’ve come to know and love. And then, I gained weight. Fast.

Within one month, I gained five pounds. I was suddenly craving Cool Ranch Doritos and Chips Ahoy cookies. I had very little impulse control. Right. I wasn’t working out and I was eating junk. It made perfect sense. Weight gain explained. I started swimming at my gym daily. I could still fit into the size 32. Everything was under control. Or so I thought.

By the spring of 2015, it became clear that I could not handle the harsh side effects of gabapentin, so my neurologist switched my prescription to lyrica. I was careful about what I ate. I counted calories. I rode my bike on its trainer every day.

By the summer of 2015, I had gained almost twenty pounds. I weighed 138. One hundred thirty-eight. Pounds. Needless to say, I needed a differently sized bathing suit, a size 34.

I swam. I rode my bike. I ate healthfully. How could I keep gaining weight?

This was absolutely unacceptable. None of my clothes fit. I didn’t recognize myself. I had to do something. I thought about the drugs I was taking. I thought about what these medications were doing on a physiological level. Neural inhibitors inhibit neurons. Duh.

(It really did take me almost a year to figure this out. I told you, I’m a zombie because, you know, like, neural inhibitors.)

Apparently these meds don’t discriminate. They slow down all nerves, not just the pesky CRPS misfiring nerves. They slow everything down. Way down. Including my metabolism and motivation.

All those years of disciplined athletic training apparently were preparing me to reach this point in my life. I needed to use everything I knew about speeding up a metabolism: a moderate caloric intake, aerobic activity, and increased muscle density.

Weight bearing exercise was (is) still out of the question. Impact was (is) impossible. Low aerobic activity would have to suffice. I gradually increased the amount of time that I swam (never mind- for now- those months when I gave up swimming…). I rode my bike every day until the point when my leg gave out. I worked with weights (seated) for my arms. I worked the major muscle groups in my left leg: one legged squats, leg extensions with weights. My right leg proved to be a bit of a challenge. I did slower extensions without weights and kept up my theraband exercises. I am now the queen of one-legged five minute planks.

It took almost a year, working every day (every. single. day), but my weight stabilized around 125. It was not my pre-fall weight, but my belly was no longer an awning for my pants. I was back in my trusty size 32 Speedo swimsuit. I was content with my progress.

The Loss

Last July, I visited my pain management doctor for the first time. The spasms in my leg were still out of control. She prescribed baclofen in addition to the diazapam prescribed by my neurologist.

Baclofen is a muscle relaxant meant for long term spasmodic conditions. Baclofen works. Baclofen puts me into a coma for several hours. I knew my future would include another struggle with my weight.

And it did. But not in the way I thought.

Since I anticipated gaining weight, I was very mindful about my diet and workout routine. My doctor had me titrate up to the full dose very slowly, over several weeks. By the time I was up to the full dose, I had lost four pounds. I was happy. Very happy. I thought my metabolism had somehow finally mysteriously kicked in. One hundred twenty pounds came and went. Sweet. I was at my pre-fall weight. I finally felt good about the way I looked (apart from my grossly atrophied non-functional right leg).

Last November, my old size 32 Speedo began to drag in the water. I thought it was just old and stretched out. I found a new size 32 on sale online. It arrived, I tried it on. It was too big. It was a different fabric; that had to be the reason. I returned it and ordered another in the same fabric as my old suit. I tried it on. It seemed ok. Five hundred yards into the the first swim, I took on water. The suit was dragging. How could this be?

I weighed myself when got home that day. 112.4 pounds. I knew I needed a size 30 Speedo. I found the ugliest, least expensive size 30 on all of the internet. It arrived and it fit. I cried real tears in my childhood bedroom.

When I went for my nerve block and my check up last month, I weighed in at 108.1 pounds. I stood, staring in disbelief at the scale in my neurologist’s office. I told him that I had been losing weight rapidly since the summer. He told me not to back off of baclofen. He told me not to stop swimming or riding my bike. He told me to increase my calories, to eat more dairy (yogurt, cheese, whole milk…), breads, and sugars. Pretty much, if it leads to heart disease and diabetes, it’s on my new diet. This is the stuff of some people’s dreams, but it just makes me feel like by body is completely out of my control.

I have stopped losing, but I have yet to gain any weight.

The Point

So what’s the point of all those words, telling you my real height, my real weights, my real sizes, my real medications, and the real struggles I’ve had with my weight over the past two years?

My point is that until CRPS, I was a bit of a jerk when it came to assumptions about weight gain and loss. I didn’t understand why or how some people have difficulty. I didn’t understand how truly difficult that difficulty can be.

The theories that calories in > expenditure = weight gain and calories in < expenditure = weight loss are overly simplistic. Normal functioning, balanced systems work this way. However, if the biochemistry is altered, thrown out of whack, the equation is far more complex and less predictable.

Again, the overarching lesson I’m learning through this CRPS ordeal is that the best anyone can do is try, especially when a disease steals all control. The best I can do is try to stay healthy: to eat right, exercise, and care for this body that continues to rebel against me.